I am mum to Dinky who is awesome- she also has been diagnosed with Autistic Spectrum Disorder-PDA, ADHD and Sensory integration difficulties

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School- ups and downs part1

It has been a crazy week.
The TAC was a major let down.
Tuesday I got a new contact book because I hadn’t put the old one in. (I hadn’t put the old one in because Friday they said Dinky’s social skills were improving, I wanted to call bull… But thought better of it. I was annoyed to see the words “followed all instructions” because I knew it wasn’t true. I have very little faith in their ability to ‘fix’ Dinky/ cure PDA in the matter of a few days. So pretty much the same reason I didn’t put the other one back in.
I went in Wednesday morning and I told them I didn’t want the book, not if they were going to tell me things I knew to be false. I told the receptionist that understand nurture likes to be positive but I wasn’t interested unless they were going to be truthful. I asked for Dinky’s nurture targets. Which I was told would be in her book bag that afternoon.
So Wednesday, when I went to pick dinky up she was really not in a good mood. When we eventually got home (which believe me, was not at all fun or easy), there was yet another home contact book. Which was a little more than ridiculous!
They obviously hadn’t listened to “NO contact book”. There was spiel about how she had not exactly done what was asked… Then her targets…

1) to do what is asked
2) to follow short instructions.

Which is setting her up to fail. I was starting to wonder which part of pathological DEMAND AVOIDANCE this school does NOT understand!

Then there was some more rubbish which got my back up.
So I wrote some things, which I shouldn’t have, and used half a bottle of tipex, until I got really annoyed and just ripped the page out.
I then ripped the page out of the other book.

We went in Thursday, well, Thursday was very interesting.
I spoke to the head of nurture. I was pretty annoyed. If you have read my previous posts I’m not exactly impressed with the idea of Dinky being in nurture, which didn’t help matters.
I told her my views on nurture, and that dinky was not suitable. I got pretty annoyed when she started talking about her child’s completely unrelated physical disability which anyone who is able to understand, would understand. Not the same as having a neurological condition that not even all the medical professionals understand.
It got to the point where I actually cried. I think the last few weeks have hit me hard. Dinky has really struggled, and it is hard to watch. I have no idea how we got onto it, but she said I should know it isn’t my fault.
Which is when I told her the truth. I used to think it was my fault, up until I found out about PDA, then it became PDA’s fault, and yet everyone was still trying to blame me, or thought it was me, or just made me feel like a crap parent of a naughty kid. Her being in nurture just went to fuel those thoughts in others.
I was assured that dinky wasn’t seen that way by the school and it is literally a case of that this is the best resource they have to meet her needs, it’s not perfect, nor a long term solution, but as a team they believed it was the best they could offer given that she wasn’t coping in the classroom.
It was nice to finally talk to someone who made sense. Even if she was a bit of a muppet for comparing a completely understood condition, to one which is pretty much misunderstood by many professionals in the UK and 99% of professionals overseas (sorry to the oz mum… I wish I could send Dinky’s new paed to OZ).

I had a really weird appointment with my support worker… Who finally gets the idea of my life, having known me almost a year now, and week by week something altogether annoying happens and it generally includes dealing with an unusually large amount of muppets compared with what would seem in the realms of probability.
That among other things.

I went shopping, got home, I had barely finished putting the shopping away and my phone rang. It was the school.

Dinky was being excluded for the afternoon. I went done and spoke to the head and he head of nurture. Apparently dinky was supposed to be doing writing, she refused, went under the table, tried to break the pencil, drew on the underside of the table, on the floor then kicked out at her lovely 1:1 for trying to take the pencil.
Here were a few other little things. The head of nurture said it was as if she had to have a physical release. Part of me was itching to say “that would be the need for sensory release, or a way of releasing her anxiety in a physical way”.
So I had to take her home, it was also advisable to clear my afternoon for today and there was thoughts about the possibility of a part time timetable. As they brought her out she ran off. We went in search of dinky around the school.
We found her on the playground. I had to work hard against the idiotic ramblings of other teachers to get her to come home.
She was not happy.

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Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….